Sticky Blood-Hughes Syndrome Support
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Professor Graham Hughes' Monthly Blog - October 2018

ghic.world/self-help/blog/o...

MaryF

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A very interesting read as always and I wholeheartedly agree with it.

My INR has been just above 4 for this past week and what a change I've seen!

For the last four weeks I've been having two vein INR tests carried out each week by my local District Nurses and thanks to these tests, my Anticoagulant nurse and I are finally getting my dosing right and keeping my INR in range.

Maintaining an INR of 4, or just above, I have had no burning pain in my abdomen or kidney area, which is awesome because it is an agonising pain and often comes with a fever and makes me terribly unwell.

My head has also been clear, as has my vision and I've had no brain fog either!👍

The week before this my INR only dropped to 3.6 but my brain fog and burning torso pain returned. I couldn't remember my words and was having pinpoint headaches. Prior to that, when my INR dropped to 2.3, I was crippled with pain, had a fever, vision disturbances, clot pain in my legs and arms and became bed bound once again.

As Professor Hughes says, it is SO important to find the correct theraputic INR level when you have APS and more often than not, the INR needs to be above 3.5 and for some like myself it needs to be at 4 but what a difference it can make to our lives when we finally get our anticoagulant right! 😁

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Hi leakeadea,

I am so glad that you also have experienced the importance to keep a stable and rather high INR around 4.0.

I have talked about this for so many years here after I read "Sticky Blood Explained" by Kay Thackray several years ago (think it was in 2012; her first book) as after I read that book and saw that I had the same symptoms like her I decided to take the "rat-poison" Warfarin my Specialists had wished to give me, but which I did not like as it was a dangerous drug (I had heard).

How wrong I was. Warfarin became my life saver! I continued to be on our site here and to learn as much i could about APS (I also bought at least 3 of prof Hughes books here in Sweden).

I think it is the last years that Specialists have realized that some of us need an INR very close to 4.0. For me an INR of 3.5 is too low. It can be difficult as we need back-up.

Good Luck to continue like this!

Kerstin

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Hi Kerstin,

It is a bit scary to be told that you have to take rat poison but when it helps you to feel better and if kept at the right INR it will prevent more clots, then rat poison can become your best friend!! 😘🐀🤗

You're absolutely right about it being difficult to get the specialists to understand about our anticoagulation needs with APS. I find that the anticoagulation nurses seem to understand us better than the doctors/specialists do.

I'm actually still fighting with the doctors because they are telling me that I can't have a Heparin injection until I drop below 2.7, which to me is absolutely nuts!

I've had a PE at an INR of 2.4, so I cannot see how it's safe to wait until my INR drops as low as 2.6 before I can get a Fragmin injection.

Like me, you know that an INR of 3.5 is too low for you because your body will tell you. I just wished that more doctors/specialists would listen to their patients and trust them a little more.

What they need to understand, is how long it will take us to recover, if we allow our INR to drop only as much as 0.4-0.5 out of range.

I personally prefer to keep my INR just above 4, at say 4.1-4.3 because it gives me less of a chance of dropping below 4. My INR used to be 3.5-4.5 but St Thomas's Hospital recently lowered it to 3.5-4 because they are worried about bleeding.

Trying to keep my INR at 4 means that my INR could easily drop down to say 3.6 or lower, like it did a couple of weeks ago. The anticoagulation nurse who's been dosing me lately, agrees that 0.5 is too small a window to try to keep the INR within.

She agrees that 3.5-4.5 is a more suitable range because it allows me to try and keep my INR between 4-4.5, which is when I feel at my best. By aiming to keep my INR at around 4.1-4.3, I will be less likely to end up with my INR dropping down to say 3.6 again.

I've read a few of Professor Hughes' books but I haven't yet read Sticky Blood. I'm waiting for the updated version to be released and am really looking forward to reading it!

I have learnt more about APS from coming on this Sticky Blood support group, than I have from the any of the doctors/specialists I've seen over the years.

Your knowledge and support Kerstin, as well as the other lovely ladies on here, has been absolutely invaluable to me and you have all kept me strong and sane during my long struggle trying to get my APS diagnosis. 💞

Professor Hughes has always listened to his patients and learned from them, I just wish that all APS specialists, heamatologists and even GPs would do the same. I guess we must all be strong and be willing to speak out, in order to ensure that we receive the best treatment possible.

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My Hematologist and other Specialists in 2011 said I should try Warfarin. It was me, myself (not the Doctors) who did not like "rat-poison" in my blood. Silly of me.

If you are on an INR OVER 4.0 you must be really very careful as that is even for us a high INR. Perhaps that is why they do not dare to give you a Haparinshot at 3.5. That will do the blood even thinner. I hope you have doubletested several times to know that your two blood-values (finger and vein) are the same every time and do not differ too much. My differ quite a lot so I have to do several tests often to know I am in range.

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I think that I was pretty shocked when I found out that warfarin was used as rat poison! 😲

We know that my Coaguchek is about 0.9 lower than my vein INR but we're waiting for the new strips to come out in November and then I will have to go back up to St Thomas Hospital to calibrate my Coaguchek machine against the new strips and then check my vein INR against the strips another couple of times, to get an average discrepancy.

Because I have a higher INR level, I'm not allowed to rely on my Coaguchek with the current strips that are faulty above 4.5 and rightly so. When my vein INR was 4 my Coaguchek said 5.5, when my vein INR was 5, my Coaguchek INR was 6.5, so the discrepancy between vein INR and finger prick INR, just gets greater and greater the higher the INR is above 4.5.

I'm looking forward to the new strips coming out, so I won't have to have vein tests twice a week but having the two vein tests each week has helped to keep my INR from dropping any lower than 3.6 and we are more confident about the dosing I need to keep my INR around 4.

I agree with you that it's better to test more often and adjust the warfarin dose slightly, that way you have a much better chance of keeping your INR therapeutic. 👍

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What I read is that you have got the same difference between fingerprick and vein at least twice. If it shows that the difference is ALWAYS the same between the two you could use the fingerpricktest (CoaguChek) and just lower the fingerprick test with 1.5 to get down to the correct vein-INR. You say the CoaguChek is lower than your vein-value. You mean it is higher or....

You see, for me there is a discrepence between the two as the difference is NOT always the same. On one test I have a vein-value of 4.0 and 4.7 with the machine at home. An other time with the same vein-value of 4.0 I may have a fingerprick-value with my machine of 4.2. I am triplepositive with high titres (incl Lupus Anticoagulant). These mentioned test-results are not done with the CoaguChekXS but with my new machine which is more reliable. A difference though.....

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That's really helpful thank you.

My Coaguchek finger prick has been slightly different between each vein and finger prick calibration, from 0.7 to 1.0 higher than the vein. This is when my INR was below 4.5.

With these faulty test strips, if my INR is above 4.5, then the difference between my vein and finger prick results can vary from 1.5 to 2.4.

This is because the current Coaguchek test strips are not accurate when the INR is above 4.5. I'm hoping this will change once the new strips become available in November.

Can you tell me what the name is of new machine you have, as maybe I would be wise to purchase a newer machine.

Thanks so much, Claire 😀

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I have messaged you.

Kerstin

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The problem with the title "rat poison" is that it doesn't explain that warfarin thins the blood which leads to the death of the rats. Most people might assume you take it "as a poison" like cyanide!

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Very true!!

No one told me what it was when I first started taking warfarin. When I finally found out about the same drug being used as rat poison, I thought omg but they explained that as a humans we are not taking any where near as much warfarin as is put into rat poison, when allowing for the difference in size of a human brain to a rat brain, if that makes sense? 😬

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Mary,

Could you please tell me , with regards to Hanna’s Cohen’s trial of Rivaroxaban, do you know what mg dose they were put on, and how often?

Was it one tablet every 12 hours or one tablet every 24 hours? ( I know it’s one daily dosing but I need to ask the question as it’s so similar to LMWH in many ways.)

Also, do you know if these patients were also put on any kind of ant platelet therapy in conjunction with the rivaroxaban? Specifically id like to inquire about the use of parallel 75 mg clopidogrel therapy, as I assume this would have been the anti platelet of choice, but if aspirin was also prescribed, that would need to be known also.

Is there any was to ask professor if you yourself do not know this answer ?

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Have a read of this, and also APsnotFab is very well equipped with her knowledge on this, far better than mine: hematology.org/Thehematolog...

MaryF

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Thank you Mary!

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Try this paper as well, although doesn't mention anti-platelet, as you know Im on clopidogrel and aspirin daily whether on rivaroxaban or LMWH.

ncbi.nlm.nih.gov/m/pubmed/3...

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Great summary- thank you! 25mg... I’m going to have to google the ,” standard” dose for A-fib...

If Apixiban is 2.5 mg once daily for standard intensity ( as I understand it) and rivaroxaban and Apixiban both work at the same clotting cascade, then I would have assumed the mg would have been comparable.

That’s why we should never assume!

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As always, a compelling read. And wishing that Professor Hughes were my specialist!

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Superb, as always!

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The article Prof Hughes quotes from the BMJ is enlightening in terms of trying to get informed treatment in the UK. It seems to say don't even bother to test because what's the point?

The blog raises questions for me. The parts about INR especially and I really could do with some advice if you have the time and can untangle the following (Yes I will be seeing GP and specialist soon but read on).

I recently had an episode of Atrial Fibrillation which was picked up in the doctor's office (subsequent ECGs have not picked it up but I know it has been happening episodically for a long time). Therefore I was given Apixaban. A low dose. I then had a spectacular aura incident for 40 minutes in a car park and a bad night when I almost went to A&E but felt too ill to move, had a few days of nausea, dizziness and weakness, then everything settled down.

Following on from the blog post - I'm not sure I understand INR. Just after starting Apixaban I had various tests including INR. My INR was 1 ('normal').

I would have thought on Apixaban it would be higher? And for Afib (and obviously for APS) surely it should be higher?

Eg Prof Hughes says that nurses are accustomed to older ladies with Afib needing an INR of 2.5 (which is not enough for APS patients).

My GP and specialist are currently of the opinion that despite positive antibody tests and cerebral symptoms (see below), I don't actually have the syndrome. But if I do have it, and I think I do, presumably I should have a higher dose of Apixaban and my INR should be higher? Even if I 'just' have episodic Afib it should be higher? On the low dose of Apixaban I feel generally a bit better now I've adapted to it, but the migraines continue. My father had Afib and died from stroke, so with the APL antibodies and other things I do feel 'stalked by stroke' as Prof Hughes so eloquently puts it.

(For those who don't know I have had 3 positive tests for Anti-beta2-glycoprotein-1 and have very severe chronic migraine with fatigue, dizziness, balance issues, history of chronic fatigue, high cholesterol, events which may or may not have been TIAs but no thrombosis or pregnancy issues and scans are clear. Family history of thyroid problems and stroke, cardiac issues.)

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You wouldn’t have an ,” INR”on Apixaban. Like LMWH, it acts on a different place on the clotting cascade to warfarin and therefore an INR is not used nor would show any elevation if tested. ( it’s anti Xa that’s the factor involved / what’s drawn for in testing anti coagulation levels when on LMWH. Apixiban also binds at this site.)

It’s a very very low dose you are on. I think if you needed anticoagulation that would not be enough. It’s safe to increase you to 2.5 mg twice a day. The 1/2 life of Apixiban is 8-12 hours, so the problem is that you are going with no anticoagulation for more than 12 hours.

You could be safely put on low dose clopidogrel ( 75 mg) -cut that in 1/2 and take it every other day- so approximately 35 mg every other day- if no problem then 75 every other or every third day.

You should also be on a statin. I’m sure you are.

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Really great advice Kelly! 👍

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KellyInTexas' response is excellent, such good advice.

Can I ask who your specialist is, who has said that you don't have APS and who has prescribed the low dose Apixaban for you. Is it a Heamatologist you are under?

I have APS and have been on apixaban myself but can give you a better response, if I can understand what type of doctor/specialists has said that you don't have APS and also what type of doctor/specialists prescribed the Apixaban.

Thanks, Claire 😀

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Thanks leakeadea and KellyInTexas for reading my long post and responding. This has cleared a few things up for me although I still don't completely understand how Apixaban works or why INR isn't involved if it thins the blood. But do I understand you're saying it doesn't affect the INR. Presumably when Prof Hughes writes about women needing a higher INR he means when they are on Warfarin.

I am taking Apixaban 2.5 twice a day, but not yet on statins or clopidogrel as the idea was to introduce things one at a time. It was my GP who prescribed this and I am also seeing a rheumatologist. They both think that although I have the antibodies I don't have the syndrome. I haven't had a thrombosis or miscarriage so if that is the diagnostic criteria they are right. However the picture of the cerebral symptoms, and more, seems to fit.

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Yes, you’ve got a lot of the picture correct. Dr Hughes is only talking about Women on warfarin when referencing an INR.

You would need to google the ,”clotting cascade “ to look at all the places (indicated by Roman numerals) where clotting naturally occurs when we make a “ plug.” This entire process of lysing a clot, forming a clot , and all the chemical reactions that occur at precisely when and where and why along the way is referred to as ,”hemostasis.” Is really mind boggling, and relies on the sub disciplines of biology, chemistry, physics, biochemistry to come together post med school to form a specialization in hematology.

Anti coagulants target ( turn off, really, or block) specific Roman numerals , or sites on that clotting cascade. Often more than one. And the tests to measure these medications at the different cascade sites work very differently and are measured very differently.

*By the way- This is why there are bleed risks when taking anti coagulation medications.

*Warfarin will block a different site than Apixiban. Just a different metric - that’s all.

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Ok I understand a bit better now. It does sound as though your GP and specialist are planning to add an anti platelet if your symptoms don't fully improve on the Apixaban.

I think because you have not yet had a dvt or PE, that they have to be that bit more careful with the anticoagulation meds they prescribe.

I have had multiple pulmonary embolisms, dvts and TIAs and as such need a higher INR level of 3.5-4 on Warfarin. When I was on Apixaban I was still clotting and so I wanted to go back to using Warfarin. That said, I think that it's possible Apixaban could work for APS, if an anti platelet medication is taken as well. I think that they are learning more and more about these new anticoagulant medications and so in the future they may well prove to be an option for those who can't tolerate warfarin.

If you find that you are still having symptoms with the lower dose of Apixaban, then ask your GP if you can increase the dose, or start trying Clopidogrel with it.

Good luck 🤞

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Thank you Mary and thank you Professor Hughes and also Kay Thackray for giving us this knowledge!

Kerstin

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Thanks Mary.

I have reposted: LUpus Patients Understanding & Support (LUPUS)!

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